22 months

It’s been nearly two years since Dad died, a lot longer since Mom died, and a lifetime since my little sister died.  A couple of therapists and a few grief groups later I’ve finally sorted through all of the charts that describe the cycle of grief, the poems that are supposed to help, and the stories that other people took the time to write down.  I have 4 pieces of paper left that didn’t end up in the recycle bin.  The second one was something that Dad gave me shortly after Mom died.  I can’t truly let these pieces of my grief go, so I’m putting them here….

Death is Nothing
Henry Scott Holland, Oxford, 19th century

Death is nothing at all.
I have only slipped away into the next room.

I am me.
You are you.
Whatever we were for each other…
we still are.

Call me by the name you’ve always called me.
Speak to me as you always have.
Do not use a different tone;
Do not take on a solemn or sad air.

Life means all that it has always meant.
Everything is the same as it was.
The string has not been cut.

Smile.  Think of me.

Why should I be out of mind
because I am out of sight?

I am waiting for you.
I am not far;
Just around the corner.

All is well.  Nothing is lost.
All will be as it was before.

Gone From My Sight
Henry van Dyke

I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts out for the blue ocean. She is an object of beauty and strength. I stand and watch her until, at length, she hangs like a speck of white cloud just where the sea and sky come together to mingle with each other.

Then someone at my side says, “There, she is gone.”
“Gone where?”

Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me, not in her. And just at that moment when someone says: “There, she is gone,” there are other eyes watching her arrival and other voices ready to take up the glad shout,

“Here she comes.”

And that is dying.

Gifts from your mother…..
Write a letter to your mother and talk with her about the gifts she gave to you during her lifetime. You might consider:

What you treasured about her
What you admired in her
How did she enrich your emotional or spiritual life
What talents or interests did she spark or encourage in you
What are you most proud of in your mom
What traits of her would you like to have for yourself
In what ways are you like her

If you could choose one thing which embodies your mother’s essence, what would you choose to keep her close to you?

Who am I now?  What do I want?

What I want is my parents back.  But I’m not sure why (exactly).  I love them both deeply in very different ways, and relied on them to help me to see clearly what wasn’t/isn’t always so clear.  They loved me in a way that only a parent can love a child~and this I now understand as a parent.  I don’t need them the way I did when I was young.  I can make decisions and live my life without them.  But I want them.  I want their level heads, their courage to look me in the eye and disagree with me without ever feeling their love of me was in danger, I want to hear my name on their lips, I want to talk about ‘our family’ in the way Dad always did~ with Dad~ as if we had the secret to happy family, I want to see Mom’s love in her eyes and hear it in her voice, I want to get Oreos from their cookie jar, I want to ask questions and hear answers.  I want.


Gone but never forgotten

Happy Mother’s Day to Mom and Carol Lee, my two greatest teachers.  If I am a good mother it is because of the two of you.  When I’m not a good mother it’s because I didn’t learn well enough the lessons that you taught me.  I cherish the time we had together and my family is blessed because of it.  You taught me not only how to parent, but more importantly, how to love.  Best mother, best sister, best friends….I love you.


I’m okay

Mom died quietly.  She was hushed Saturday, asleep with her eyes closed, breathing more calmly than on Friday night.  When she died there was no big sigh, no visible loss of life, nothing remarkable occurred other than nothing.  Nothing happened.  She didn’t blink.  She didn’t moan.  She didn’t squeeze Dad’s hand, resting peacefully in hers.  She didn’t breathe.  Her heart didn’t beat.   3:10 pm, Saturday, August 8th, 2009.  Nothing happened and Mom was gone.

There was a little bustle of activity as phone calls were made, death was confirmed, her mouth was closed.  Alex closed her mouth.  I didn’t have the heart to make the joke that Mom would have made….she even died with her mouth open.  Mom did talk a lot.  She used to.  But now she wouldn’t.  I’d never hear her voice again.  And my heart wouldn’t beat the same anymore either.

When the bustle was done, Dad and I sat there.  We didn’t know what to do, or what not to do.  When Mom stopped breathing, her heart stopped beating, she left a big hole in the world, and we were in it.  So we just sat there.  The hospice nurse came and hugged us.  She visited us from just outside the hole.  Then we sat some more.  In Judaism, the shomerin, or keeper, sits with the body of the deceased until burial.  Respect for the dead.  I don’t know why we sat.  Respect didn’t occur to me.  I needed to be with Mom for the last time.  I needed to see who would take her to the next place in this life.  When he came we were a little surprised.  My first thought was Harold, from Harold and Maude.  He was respectful and young and very serious.  Mom was in good hands.  Dad and I left.  The hole came with us.  We took it to Dad’s house and sat some more.

I know that Mom is dead.  I can say it and it doesn’t hurt, because I’m still in that hole.  The hole is protecting me and I can’t hear the voices outside.  I can’t even hear the voices in my head.  Mom is dead.  I can shout it from the rooftops.  I can scream it at the top of my lungs and it doesn’t hurt.  My heart can’t hear it.  It beats a little differently now.  It stops for just a moment every time someone says the un-sayable.  If my heart doesn’t hear it, it isn’t real.  As long as I stay in this magic hole, and my heart beats in the new way, I’m okay.

Maybe tomorrow I’ll tell you about Disneyland.  Mom loved Disneyland.


of Mom….if you knew her, please add to my new page.  Click on “memories” (under “something’s burning” above) and use “comments” to share the woman that you knew.


Lori asked if we would sit shiva and  I said no, who would come that knows Mom?  That was my knee jerk reaction.  Raised a jew but not trained a Jew.  We never sat shiva growing up. I didn’t even know what it looked like when I was young.  But the day after Mom died I realized I need to sit shiva.  When I told Dad he sounded almost relieved.  Or maybe I was imagining things.

We are Reform Jews.  Orthodox Jews sit shiva for seven days.  That’s what shiva means: seven.  Reform Jews sit shiva for three days.  I don’t know who picked three.  Officially shiva begins as soon as the funeral finishes.  I checked in with my friend who is studying to be a rabbi and she said shiva can begin when I need it to begin.  So my shiva began on Sunday.  My dear dear friends brought lunch and dinner and spent time with me.  They let me talk and they listened.  They made me sit down and they fed me.  They gave me room to breathe.

Last night and tonight we had a service at home.  Our wonderful cantor and my friend who is almost a rabbi officially, and is clearly a rabbi in every other way, led beautiful services and gave me room to pray and remember and cry surrounded by friends who will wrap themselves around me and my family.  It gave me a place to begin.  I stopped holding my breath.  And I told them about Mom.

So yes, I did sit shiva Lori, and it was amazing.  Thanks for asking.

RIP Pauline

We’re lucky we had you for as long as we did.  I’ll miss you forever, but the missing is sweet.  I read this today:


p style=”text-align:left;”>There are stars up above,
so far away we only see their light
long, long after the star itself is gone.
And so it is with people that we loved —
their memories keep shining ever brightly
though their time with us is done.
But the stars that light up the darkest night,
these are the lights that guide us.
As we live our days, these are the ways to remember.
— Hannah Senesh, Mishkan T’filah

When the missing becomes too much, remind me to look up and find your light.  I love you Mom…I’m the luckiest daughter in the world.


Waiting was wrong.  I didn’t like waiting.  I’m witnessing.  Mom is doing and I’m witnessing.  Waiting implies an investment in the outcome.  And I don’t want an investment in the outcome.  It’s not like this has a surprise ending.  And I won’t like it when it comes.

So I’m not going to wait, I’m going to witness.  Mom hasn’t eaten in three days.  She’s heavily medicated so that if there is pain she won’t feel it.  She’s been sleeping for two days.  Kam says that the last sense to go is hearing, so we are spending time in Mom’s room.  We’re talking and laughing and crying.  Today we bought a puzzle book.  Mom has always been good at words, so I’m asking for her help with the word puzzles.  She got one wrong.  The word wasn’t snore, it was norse.

Yesterday Nancy and I were talking in Mom’s room.  She has told her kids that when she gets alzheimer’s she wants them to put her in a nursing home and forget about her.  Pretend she’s already died.  Nancy teaches alzheimer’s patients every day.  She sees what happens.  She understands the pain and the suffering.  She understands the loss.  She understands the ugliness.  She says she knows she’ll be the one spreading shit all over the walls.

She’s wrong I think.  There’s also joy and laughter, just like anywhere else.  There are the wonderful life stories Anne tells during moments of lucidity.  The hugs and kisses that Jacquie is so free with, when she isn’t pissed.  The compliments that Lorraine doles out like candy along with her advice about how to walk sexy.  But that’s not why I visit.  I visit because I need to be here.  I want to spend time in Mom’s world because it is also mine.  I may not have much to offer her now, but she still has so much that I need.  Even if she’s just holding my hand and sleeping.

It’s now seven years since Mom was diagnosed with alzheimer’s.  I don’t remember all of the steps it took to get here, but I do know that I could not have taken them alone.  Four years ago I said it better than I can say it now.  Now the pain is too real, the loss is too close.

 “Flibber my jabber?” Mom asked.

“Yes, Mom.”

“Thank you, honey”, she said.  Her face relaxed into the smile that has always come readily to Mom.  She squeezed my hand and settled back.

Three years ago Mom was diagnosed with Alzheimer’s.  But I had been watching her change over several prior years.  She got more frequently lost, forgot her thoughts.  She stopped reading.  Still, the diagnosis generated fear and rage in me.  I felt shocked and let down, cheated of some unnamed birthright.  Unchecked emotions bashed each other around, until I finally realized that Mom and I only have right now to be together.  Now is my time to learn to live both with and without my mother. 

Alzheimer’s has not eliminated the powerful woman that Mom has always been.  Her guidance still shows me how to maneuver the life she gave me.  Even as an adult I know that the path I am traveling seeks to follow the footprints my mother leaves.  How needful I am still of her direction, of her love, of her presence.  Where parents are usually the ones stricken when it is time to release a child, for me it has been hardest to release my mother from my grasp.

Since her diagnosis, Mom has become equally more and less of her self.  She is altered now, a pastel version of the vibrant woman she once was.  I still see the mother that I love and need.  And I’ve come to know that she needs me, too, in ways that I didn’t understand before Alzheimer’s.  I see Mom nearly every day.  Sometimes I watch her sleep, sometimes I just hold her hand, and much of the time we talk.

Alzheimer’s has stolen Mom’s ability to use language.  I will never again know what we are talking about.  Now I read Mom’s face.  Maintaining the connection that we’ve always had is what guides us.  The bond we share transcends language, there is no longer a need to understand the words, and there is no need to understand the meaning.  I am happy just to be with her, following her lead, talking in nonsensical terms about unconnected thoughts.  Our relationship is, in many ways, unchanged.  She requests, demands, or smiles an un-shared joke, and I respond fittingly.  Her need for me fulfills my need for her.

Alzheimer’s is carving a long and meandering path to loss.  Mom and I are strolling together.  The way is not clear, and there is no map.  It is a path I am getting to know, and learning to appreciate for what it is.  It turns and drops off unexpectedly sometimes, then wanders slowly; taking the time it needs to reach its final end.  Each step is its own treasure, however painful.  I am still not at all comfortable with the destination, but I am learning to accept it as truth.  One day I will walk without my mother.  And as she fades into her twilight, she is showing me that I can.

We’re at the end of the path and I think I’m not ready.  But I trust that Mom will know when I am.


Kam told us things would go up and down. 

Today Mom did not eat.  She opened her mouth and Delia spooned in the ice cream mixed with protein powder and whatever was for lunch.  Mom waited.  She didn’t close her mouth.  She didn’t swallow.  She waited.  Finally Delia gave up and wiped out her mouth.  Delia tried again, but Mom is a determined woman.  She’s always been that way.  Mom out-waited Delia.

We are doing a lot of waiting right now.  While we’re waiting we’re doing the Jumble.  That’s my favorite.  Dad’s getting pretty good at crosswords.  Especially the early in the week puzzles.  Later in the week they get hard.  Then we have to wait until Monday again.  Em and I did about half a sudoku yesterday. 

Rose comes by while we are waiting.  And so do Marion and Betty.  And June comes by when she doesn’t like the singing in the dining room.

Rose has been here as long as Mom.  When Mom first moved in we wondered why Rose was here.  She is a beautiful woman with the sweetest disposition.  She tells me how beautiful I am every day.  Obviously she’s also brilliant.  She thinks I should be a movie star.  Truly brilliant.  Five years ago she got her nails painted bright red every week.  They were long and beautiful.  Chains, bracelets and rings decorated her ample neck and arms.  And she always carried her purse.  There was always gum in her purse.  She was one of the few who could chew gum.  She remembered how to chew.

Cowboy Bob arrived a few years after Rose.  By then Rose was beginning to forget.  She and Bob enjoyed each other’s company.  Then they started kissing.  Bob could barely hear and he could barely see, but he could always find Rose.  It didn’t take long for them to both get very chapped lips.  The staff had to limit the kissing.  And keep an eye on the night time rendezvous.  So Bob started kissing the other girls.  Rose thought they were breaking up.  She paced the hallway for so long there were sweat stains down the back of her shirt.  Then she forgot they were breaking up and everything was fine for a while.

Now Rose is waiting for her sister.  She visits Mom while she’s waiting for her sister.  I”m glad she’s waiting with us.


Mom got kicked out of hospice about four years ago.  She wasn’t sick enough.  She wasn’t likely to die in less than six months.  Now she is.  So now we have people who look deeply into our eyes and ask how we are, they assess Mom and tell us how she is, and they bring in new furniture.  I can particularly appreciate the new furniture.

Mom has a new bed, a new wheelchair and a new side table.  And if she needs medical attention, the nurse will come and take care of her.  We don’t want her to go to the hospital, we don’t want to put tubes in her or needles.  We don’t want her to live forever.  We do want her to feel comfortable and cared for and serene.  If serene is possible.  It’s hard to say how she really feels, since she can’t talk to us.  But we look at her in her new bed all tucked in with pillows and blankets and the love of all the people around her, and we think she looks serene.

This is how I hope my end of life looks.  But with the current state of our healthcare system, this isn’t the most likely scenario.  The penniless can have this care, and the rich can have this care, and people with less than six months to live can have this care.  The rest of us can’t afford this care.  We have to go to the hospital or a nursing home to get insurance, the insurance we’ve been paying into for decades, to put in tubes and needles and lay us down next to machines that beep and blink and remove any sense of serenity we might hope for.


“If you need anything I”m in room number 9”.  Marion wants to help take care of Mom.  He had to say this a couple of times before I got it.  Marion doesn’t have any teeth.  He’s been in a wheel chair for years due to a stroke.  But he had issues before that.  He’s told me the story so many times.  Each time I understand a little more.  Some day I’ll get it all.

Marion loves my dad.  When Dad comes to visit they sit together with Mom at the table by the door in the big room.  They drink coffee and they talk.  Dad understands Marion really well.  Even the caregivers need help understanding Marion, so they ask Dad for help.  Marion waits for his coffee until Dad arrives.  They talk about growing up on farms, they talk about baseball.  They talk about Mom.  Marion keeps an eye on Mom when we’re not there.

Marion’s mom was a really good cook.  She made something that Marion calls potato candy for him when he was small.  I searched for potato candy on the internet and came up with all kinds of odd things.  Finally I found it.  It’s potato dough rolled out and spread with peanut butter then chilled and sliced.  When I told Marion I’d found the recipe he was beside himself.  I promised I’d make him some potato candy, but I haven’t done it yet.  There are always other things to do…laundry, chores.  Marion will be 84 next month.

Now that Mom is really sick she’s not spending so much time in the big room.  I think Marion is lonely.  He doesn’t have anyone to sit with and drink his coffee.  We’ll be visiting a lot this week.  I’ll make Marion his potato candy and we can all sit together and drink coffee and talk.  Mom won’t mind if we spend a little time with Marion.

2 (1 lb.) boxes powdered sugar
1/2 c. hot mashed potatoes, drained
1 sm. jar crunchy peanut butterMix sifted sugar into potatoes a little at a time by hand. (Don’t panic when potatoes liquify as the first sugar is added. This is what it’s supposed to do. Just keep adding sugar until it is pastry consistency.) Sprinkle wax paper with additional powdered sugar. Take baseball-sized ball of mixture and roll out like pastry. Spread with peanut butter and roll like a jelly roll. Wrap rolls in plastic wrap; chill and slice.

Makes 2 rolls.

Mom is dying.

Mahmoud Ahmadinejad stole the presidency in Iran. The president invited a professor and a cop to share a beer.   There’s a warming trend.  A bridge collapsed in China.  Ricky Henderson will be inducted in some hall of fame.  Mom is dying.  In hours or maybe days, Mom will die.




And I’ll live.  The warming trend will continue.  Or it will cool.  My husband asked me how Dad is doing.  He asked how I am doing.  I don’t know.  How does one do while watching the one person on the planet who really knows everything prepare to leave forever?  I don’t know how I’m doing.  How should I be doing?  I’ve never known less than I do right now.

Yesterday we talked about feeding tubes and breathing tubes.  Mom had a stroke we think.  Her right side does nothing, her left hand and leg still move.  When she tries to talk it’s the left side of her mouth that moves.  But the sounds are gutteral, animal like.  Her tongue is the problem.  Limbs are irrelevant after all these years suffering the losses gifted by alzheimer’s.  But tongues we need.  Tongues allow us to swallow.  Mom can’t swallow.  And when people can’t swallow they die.  People need food.  And water.  So we could put in a feeding tube and she would live.  Making funny gutteral noises when she wants us to know something.  Sitting with pillows all around her, because she can’t really sit but has to be propped, with her mouth open staring vacantly at the wall of pictures that have accumulated over the last several years.

My children have grown up on that wall.  They don’t remember when Grandma was still Grandma.  When the brilliant woman who raised me could take care of them…when she talked to them and loved them and taught them.  They know and love the woman that she is now.  The Grandma who says words that aren’t real and doesn’t know who they are but holds their hands anyway and looks into their faces with all of the love she can’t express.  Until yesterday, when her face went blank.

No, I don’t think she’d want a feeding tube.  Or a breathing tube.  I think she’d want to go with whatever grace she’s allowed.  When she’s ready.  If we wait for me to be ready, really ready, that day won’t come.